Maudsley Parents Conference Recap

I apologize for not blogging about this sooner- I've been fighting off some sort of upper respiratory infection since Thursday morning, and my energy has been essentially non-existent. On the upside, I'm feeling tons better, so I suppose that whole "self care" thing does have something going for it.

The conference, "Working Together for Recovery: Families and Professionals as Partners in Eating Disorder Treatment," was this past Monday in Bethesda, MD, and every seat in the ballroom was filled. Many attendees were treatment providers from the greater Washington DC and Baltimore area, but numerous parents also attended. I think this gathering of minds in pursuit of a common goal--better treatment and understanding of eating disorders--should be happening more and more often. I hear a lot about the research/practice divide, which is the difficulties in transitioning research findings into better treatments in a timely manner, and conferences like this are one significant step in the right direction.

Besides getting to see my good friend (and conference organizer) Jane Cawley again, I also finally got to meet Harriet Brown in person, after nearly three years of email correspondence. I also got to meet another mom I had been writing for several months, and it was so wonderful to put names and faces together.

Dr. Walter Kaye spoke first, and a video of his presentation is below. It's just under an hour long, so make some popcorn and enjoy! That's what my parents and I are going to do tomorrow (what can I say? I got my geek tendencies honestly...)


Dr. Daniel Le Grange spoke second, and I would have loved to share his talk in its entirety. However, some of the research results he presented were still under embargo (a research journal's equivalent of a gag order), and if I blogged about it, his paper could be pulled. So, part of his talk will have to wait.

Another study that Dr. Le Grange discussed was published this week in the International Journal of Eating Disorders, titled "Early response to family-based treatment for adolescent anorexia nervosa." In this study, researchers determined that a gain of at least 3 pounds by the fourth session of FBT predicted disease remission by the end of treatment.

One significant difference from previous studies is how the researchers defined remission. Before, remission was defined as the return of regular menstruation and a body weight greater than 85% of ideal. However, there's quite a large gap between "not meeting formal diagnostic criteria for AN" and "recovery." In this paper, however, the researchers defined remission as regular menstruation and a weight greater than 95% of ideal, a much more rigorous definition of recovery and one that I wish more researchers used. Too much ongoing physical and psychiatric damage can occur in that netherworld between no longer officially "anorexic" and not quite recovered.

Le Grange and co. didn't do this study to determine which families to jettison after three weeks--far from it. The goal, says Dr. Le Grange, is to ultimately develop a sort of "FBT Plus," to provide extra support to those families who need it. If, by the end of four sessions, weight isn't increasing, then clinicians know that this family is likely to have more difficulties throughout treatment and should be provided with more clinical and outside support.

Lastly, Harriet Brown spoke of her family's experience using Family-Based Treatment.

You can find copies of all the presenters' slides on the Maudsley Parents conference site above.

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6 comments:

Diane Macrae said...

Carrie, what do they use for "ideal" weight? BMI?

Jane said...

Thanks, Carrie! I'm so glad you were able to come!

Carrie Arnold said...

Diane,

I'm not sure- I know it's not BMI because Dr. Le Grange said its usefulness is dubious, especially for adolescents. I know for adults they recommend at least a BMI of 21-22, if they don't have your growth charts. They strike me as scientifically savvy enough to be able to input percentages based on individual histories.

Cathy (UK) said...

They probably use percentiles for children - based on age, sex, height and sometimes bone age. The important issue is whether children are growing and developing properly. Starvation in childhood prevents normal bone growth and the acquisition of bone mass such that peak bone mass is lower than it would have been had the child been adequately nourished.

Great presentation :) Thanks for posting it Carrie. Prof Kaye talks a lot of sense. He questioned the main drivers of anorexia nervosa... I think these probably vary between different individuals. For some, continued weight loss may be due to distortion of body image, while for others (like me) weight loss continued because I felt unable to change my eating and exercise behaviours without becoming over-anxious due to a perceived loss of control.

Laurel said...

As far as statement of “remission” is concerned, the factors that designate whether a patient has recovered or not, do not truly identify with the individual. What about the patient who gains enough weight to have menstruation, and/or enough to meet a percentage, yet their diet is that of a ritualistic pattern of only certain foods, they cannot eat socially or their body image is still distorted? Does meeting the weight and hormonal requirements signify remission?

Sorry for rambling, I dislike when “normals” are placed per individual. I would hate to see a patient who is excelling in recovery be placed into a recovered category, and then swept under the run. Perhaps my fear of abandonment is taking precedence here. Just a thought however.

Jane said...
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I'm a science writer, a jewelry design artist, a bookworm, a complete geek, and mom to a wonderful kitty. I am also recovering from a decade-plus battle with anorexia nervosa. I believe that complete recovery is possible, and that the first step along that path is full nutrition.

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nour·ish: (v); to sustain with food or nutriment; supply with what is necessary for life, health, and growth; to cherish, foster, keep alive; to strengthen, build up, or promote



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